Thursday, 24 April 2014

She's coming

You guys, do I have a story for you. It's been CRAZY DAYS since I lasted updated you here, and I was all set to come home and write a nice juicy update.

But then this little girl, with her usual left-field, centre-of-attention antics, had other ideas. We met with our fetal medicine doc and our OB today and discovered from today's growth scan that little seedling's development has dramatically curtailed over the last few weeks. She'll now be better out than in, and so it's time.

Let's admit you tonight and do the c-section tomorrow, said Dr B.

H and I stared. (Stupid, I know; this is after all the moment literally everything has been building toward.)

I don't have adequate words. She's small and we're of course worried about how she'll fare with surgery (which will probably happen over the weekend) and NICU, etc. We're also crazy insane exited and overwhelmed at the thought of finally holding her and looking into that beautiful little face, discovering what colour that mop of hair is.

Send good vibes guys. And we'll see you on the other side.

Friday, 18 April 2014

Getting prepared, part III: and the universe laughed

Alternate titles for this post: What a difference a day makes; Ready or not,  here she comes; Reasons why all your 'planning' is stupid; Planning schmanning; or the simple Gotcha!. Any works really, so take your pick. And you'll have to excuse me if this post is all over the place, a rambling, incoherent collection of my thoughts at this juncture. These have been heady hours.

Yesterday at our appointments with both the fetal medicine specialist and our OB, we learned that although little seedling's growth is still on track (she's now 1.75 kilos, or 3 lbs8 oz), the diastolic flow of her umbilicus has further declined. While Dr B did say that he 'doesn't think it's a matter of the next 48 hours', I was given the first of two steroid shots to help mature her lungs, and we've been put on high alert. I've just returned from the clinic where I had the second shot, and tomorrow we're back again for another non-stress test and further doppler reading. Basically, I'm existing right now just to gestate this little girl (even though my maternity leave doesn't official start until month's end). I might as well just move in to the hospital (though I'm glad they haven't suggested admitting me - yet).

And even though I was given an inkling of this trajectory nearly two weeks ago, intellectually I guess I couldn't quite grasp it. Not for the first time though, my body has been smarter than my brain, and I find this level of intuitiveness amazing. Yeah, my body gets it, she's doing her job and she's been trying to tell me something. I was slow to catch on, but I'm getting there. Physically, I've felt extremely pregnant - like, imminent delivery, as I am now learning - for several weeks now. I haven't slept through the night in weeks, and when I wake up at four in the morning, it is with the ravenous need for food RIGHT NOW. (I'm kind of also hoping this means little seedling is on a final, fortifying growth spurt.) I have crazy, constant Braxton Hicks that seize me with a breath-taking ferocity, and a constant pressure in my lower pelvis. And ok, I often pee a little when I sneeze. Then I feel like I have to pee all the rest of the time, but when I get to the toilet, nothin' doing.

When they measured the amniotic fluid levels along with little seedling's growth yesterday, here were the results: I am carrying a girl who is a wee bit behind in terms of average growth, but she is swimming inside a uterus measuring at 41 weeks. Yikes.

You guys, this is pretty much it. (But I still hope she'll hang on another few weeks, just to build up a bit more and gain strength. I can hope, right?)

H and I spent yesterday after the appointment stumbling around in a kind of daze of heightened awareness, yet not really aware of anything else besides this Huge Thing at all. It's scary but also exciting to think we might meet our daughter so soon. We cried and we had huge grins on our faces and got distracted and irritable and then laughed and cried some more. We felt all the emotions. All of them.

 
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So how prepared are we? With the all important details?

Finish that novel I was working through? Squeeze in one last date night with H? Go for a pedi to avoid in-hospital embarrassment at my unsightly winter toes (and while we're at it, don't I need to do something about my now unknowable nether regions, which I haven't been able to access since, like, February)? Baby clothes washed and ready? Yeah, some of that stuff we've managed. I still haven't packed a hospital bag. And in truth, we still need to finalise a name for this girl (we're pretty much there, though I have moments of paralysis thinking about the responsibility involved in shaping a whole person's identity in this way). But then, thank gods I managed to watch the final episode of True Detective; I'm not sure I could have gone into this not knowing of the fates of Rust and Marty.

But seriously though, I had a epiphany sitting in the crowded clinic yesterday, awaiting my shot and trying to absorb this scary new development.

I have agonized over the possibility of a scheduled C-section - recommended by Dr B as the best way to avoid unforeseen complications and make sure everything is in place for her transfer for further tests and surgery - and a (maybe?) desire to try for a vaginal birth. I have struggled with doubt and worry that I have not 'enjoyed' this pregnancy 'enough', coping as I was with recurrent terror and stress from so many quarters. Should we have done birthing classes, even though I felt and knew we wouldn't 'fit in', just so as to maximize the whole experience? Shouldn't I have spent more time listening to my hypnosis tracks, to make sure I am all calm and collected and present for the birth itself? Yadda, yadda, yadda....

But here's the thing: when we get to the end game, the real deal, none of this - the little things we do to convince ourselves we have some control over any of this, or even the lack of control itself - matters even one jot. It's superfluous. She is all there is.

It kind of reminds me of that poem, one that has brought me much affirmation in times of difficulty. (Go read it now; it's short and powerful.) Only now, in an entirely different context, it becomes all the more uplifting and joyful and speaks to me on a whole new personal level.

We sit and we wait, H and I, for our great day to dawn, for our little light to fill the world.


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We've worked so hard to get here, and she's worked so hard to stay and grow and thrive. It's been such a long journey, and yet it's far too soon. Now more than ever, we have to keep believing in her.
Whatever the coming days hold for us, (and I'll certainly endeavour to update), keep us in your thoughts, won't you friends?

Wednesday, 16 April 2014

Getting prepared, part II: calling all NICU veterans

As a brief postscript to my last post: we went in this week for one of the many non-stress tests that will lead up to little seedling's arrival, and let's just say, she didn't perform up to standardized expectations...Her heartbeat stayed a steady course and was nice and strong, but she just refused to jump on command. H and I weren't really worried though; our parental intuition has become strong, she had been doing her routine kung fu moves on my bowels only an hour earlier. In those moments at the clinic, as bad luck would have it, she was just more in the mood for a snooze than a triple somersault (which of course she was prepared to do as soon as the monitors were removed).

A moment of maternal pride: my kid is already set to challenge the legitimacy of normative, numerically-based testing, achieving in utero what it's taken me four degrees and an entire career to do. Then again, (having proven herself very blissed out early on), maybe she was still just chill from all the jazz music and brown cafes and one too many Belgian beer of last week...?

Either way, a girl after my own heart.

One chilled out baby. Unlike her mother. Source.

 
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But that's not really why I'm here. Today, I want to ask your thoughts on a topic which looms large in my mind these days.

I think when I said that there was much to prepare before little seedling makes her appearance, a lot of people heard stuff to prepare. Trying as we are to be proponents of a certain level of simplicity parenting, we're working not to get too hung up on stuff just yet, especially as her hospital stay will postpone a lot of those immediate needs, and since each baby is unique in there needs and habits, it seems to make sense to wait and see what's actually useful. We have the basics: enough clothes to start her off, a place for her to sleep, and this carrier which is recommended for babies with low muscle tone, as well as a ring sling. All the rest will come, and we're not fussed about that.

Our preparations, however, aren't really about that anyway. Basically, there is a huge part of me that has been terrified preoccupied with the prospect of a NICU stay since the moment the possibility was raised.

I've slowly learned to adjust; there aren't (as many) moments these days of late night sobbing on H's chest, overcome by fear and heartbreak at the thought of my little girl in such a scary, clinical environment, hurting or feeling alone. I'm trying to embrace what lays ahead as a necessary and helpful stepping stone to getting our daughter healthy and home in our arms, where she belongs.

And I'm grateful that we got all these diagnoses prenatally and were given time to prepare mentally. I don't know how I'd cope having all this sprung on me at birth. It helped a lot that we've been able to tour the ward where she'll be staying and get a sense of the facilities there. We've met with the ward staff and the neonatologist and the pedeatric surgeon, all of whom seem caring and good at what they do.

I think I do continue to worry about how the crucial bonding of those early hours and days will work. I've had all the benefits of skin-to-skin parenting so thoroughly drummed into me that I can't imagine how she'll feel our presence or know how much love and strength we want to convey to her if all we're able to do is hover over a hospital bed. Or maybe I'm worrying needlessly...I know the hospital is keen on supporting these opportunities for intimacy where medically possible, and there is a lot of support and education for breastfeeding as well.

But still, I can't quite picture it, how we'll spend our time, how we'll bond with her, what that atmosphere will be like.

So that's what this is mostly about. Being as mentally and emotionally prepared as we possibly can. I guess there are practicalities in there too, like what to pack and what to arrange beforehand.

And really, here is where I could use some help.

Bloggy friends, I know that many of you have walked this arduous road before me, and I could use your nuggets of NICU wisdom right now. Were there things you wish you'd known or done to ease the experience? Little rituals you found particularly comforting? Essential items that made your stay more homey, or at least less stressful? And what exactly is it like in there? How much time did you spend bedside? All your reflections and insights are so appreciated.

Monday, 14 April 2014

Getting prepared, part I: babymoon

Alright I admit it: one of the (somewhat frivolous) things on our preparations list was a final waddle jaunt someplace relaxing and slightly luxurious, while we could still pretend it's just the two of us for a few days and get some respite from the whirlwind of appointments and practicalities looming along with little seedling's arrival. H suggested a last minute, doctor-approved, comfortable-journey-by-train to the continent while it was still a possibility; and so we spent last week exploring some lovely Belgian towns, soaking up the fin de siècle atmosphere of amazing grand cafes, drinking the justifiably famous Belgian beer (him), eating mussels (him again), pastries and chocolate (me, me) and generally being aimless and immersed in something other than our day-to-day reality. 

A babymoon is meant for those last moments of couple-y decadence before life is turned upside down by late night feeds and hastily stolen moments for personal hygiene and long conversations about the contents of baby's diapers rather than the contents of the Sunday papers over a bottle of prosecco.

At least that's the idea, right?

For us I think it was as much a respite from the hazy blur of often scary and overwhelming medical stuff that's characterized this pregnancy. And really, there was as much happy anticipation of little seedling's arrival in our conversations as there was avoidance of that inevitability.

We strolled...and window shopped in beautiful baby boutiques.

We visited late night jazz cafes...and laughed at her reactions in time to the music.

Ravenous young lovers with eyes only for each other, we were probably not. (Well, there was our two nights at a beautiful Brussels hotel with a rather racy past. Does that count?)

So I guess not a babymoon in the traditional sense (if the term 'traditional' can be aptly applied to a trend that has arisen in recent decades to respond to our growing affluence and consumerism) of decadence and pampering implied by the term. But ok, both owing to financial constraints and to the fact that I have no intention of eternally forgoing the reading of novels or long country walks just because I am about to delve into active parenthood, ours was a more subdued affair, though none the less delightful for that. Here's a visual sampling of what we encountered....










Sunday, 6 April 2014

An update, more scans and a change of plans


Well, insofar as we ever had a plan anyway, and if you consider a ‘plan’ to be: having gotten pregnant, hope and pray to all the gods of fertility that baby grows and stays; deliver baby on or near due date.

For us, June 4th was meant to be the magic number. I had even fully convinced myself – in flagrant disregard of just how many unforeseen loops this whole journey has thrown us – that we had something like eight weeks still to plan and prepare and freak out a little at the massive, mind-bending, life altering change-in-the-form-of-tiny-human that is about to befall us.

We won’t be making it that far, it seems, or anywhere near, unless we’re very lucky.

But let me backtrack a bit.

This week has been a big one for us, full of important milestones passed and happy news in the world of little seedling’s development. First and foremost, her ventricles seem to have stabilised at their slightly reduced measurements, and after 30 weeks they tend to feel that those measurements are likely to hold steady. So we’ve kind of allowed ourselves to exhale on that one. Then, at our request (because our medical team is thoughtful and awesome and takes our concerns seriously), we were sent to another city and another clinic to undergo a fetal echocardiogram. Strictly as a precaution; 40% of Down syndrome babes experience some kind of heart abnormality, and this is by far the scariest and most sever complication that comes with a diagnosis. I can happily report that the cardiologist saw what looks like a normal heart and no cause for concern, though further tests will be carried out on little seedling’s arrival. Yay for happy news on scans!

But because this is life, and ours never seems to want to sail a straight course, opting instead for the adventure and uncertainty (and because, well, every baby comes when it damned well pleases and isn’t that just a part of the crazy euphoric, terrifying adventure?) that comes with really being alive, there are some new logistical issues to navigate.

My amniotic fluid levels are stable for the moment, but it’s something they want to keep a close eye on, given the risk of preterm labour. And on our u/s, we learned that the diastolic flow through the umbilicus is reducing. This is not entirely a surprise, as we know that with a Down syndrome pregnancy, the placenta carries the same trisomy, and therefore a likelihood of placental insufficiency at some point. We were kind of prepared. And yet, we were spectacularly unprepared, in the sense that I hadn’t thought, not seriously, about what it might mean. As in, like, delivery only weeks away.

We’re at 31w4d now, and the new goal is to make it to 36 weeks. June 4th will certainly not be our magic number, but as long as she gets here safe and grows healthy, everything else is frills, really. There will be an upsurge in the monitoring from here on in, probably every other day, just to keep a close eye on the flow within the umbilical cord and make sure she’s getting all the nutrients she needs. She’s always been a tiny one, measuring on the bottom end of normal range since about 22weeks, (while I’ve had trouble gaining weight myself) and I so want her to be in the best possible shape to face and overcome all the challenges she has in store. Our medical team don’t seem worried about the possible medical implications of a delivery in the coming weeks, since her progression in terms of weight gain has been steady, and I have a lot of trust in them, so I’m trying not to panic either.

Still, suddenly it feels there is a lot to do and arrange (the practicalities of which are also huge, and warrant a post of their own, soon to follow). I think we just lost approximately four weeks of processing time, and as anxious as we are to meet her, our heads are spinning as we try to take in yet more new twists and turns. A month from now...I can’t even finish that sentence, not yet. The possibilities are scary and exciting and unknowable. And I'm trying my best to trust in the process, to trust in our caregivers, trust in her, in my own body. Deep breathes.


The technicolour, lighting speed future awaits